Evelyn is home from hospital again, while we wait for tests to come back and for the paediatric epileptologist to read her MRI and EEGs. We won’t know anything much until Thursday, we don’t think.
Evelyn continues to seize and twitch and sleep, and I continue to sit and watch her and worry.
The doctors have started Evelyn on Pyridoxine, which is a form of Vitamin B6. A deficiency can cause seizures and while it’s quite rare for breastfed babies of non-vegan mothers to be deficient (like, broken chromosome rare), it’s an easy thing to trial while we wait for results. Extra in her system isn’t going to harm her in the slightest, and so we’ve got nothing to lose.
We’re waiting on metabolic tests to come back, as well as tests to look for inborn errors of metabolism. The lumbar puncture on Monday was successful on the third try and much less traumatic for everybody. It did take a few goes to get a cannula in to draw blood though and she’s a bit bruised and hole poked today.
It’s limbo really, this space between tests started, specialists called in and answers found. However, it feels like we’ve got a good plan and I know we’ve got a good team working on Evie’s problems.
Nothing much has changed, really.
But tonight, I get to have a long hot shower and sleep in my own bed. My family is all together under one roof and at this point, that’s enough.
Thursday, here we come.
Comments
18 responses to “Home. Again. Not sure for how long.”
More hugs. I wish I had something more useful…..
I have only recently stumbled across your blog and I’m hooked!!
I keep checking my fb feed for new updates on your little family!
I have no advice, no words of wisdom, no way i could relate to the sheer strain that this must be
but your words are precious and the love that is lighting that tunnel, even if it is only very dim, is very powerful in your words
i know i’ll be reading, and praying that your little one is ok 🙂
I’m glad they’re trying out the pyridoxine in the meantime, sometimes doing something in while you wait can make it all feel less futile. So glad you’re being taken seriously on this and she’s getting looked at. Hang in there, we’re all behind you, waiting for answers with you
I’m so glad you get to be at home together for a while.
Hope you get some answers soon
Glad you’re home! Hugs…and hope you get answers soon.
Glad you are home. Still praying for a good sollution
Glad the LP went more smoothly this week. You take it easy, ya hear? xxx
Awww… sleep well. Enjoy your family. I’m glad you’re home for a bit.
Glad you are home… hope you get an answer soon
I’m glad you have gotten home for a break and that the doctors are taking it seriously. Much love for you all.
Hoping for good news on Thursday.
My babies would have hated that swaddle suit.
They didn’t like being wrapped up at all.
I’m glad to hear you had some time together, that you got to cuddle her without the hospital, that you are happy with her doctors and nurses so far (that always helps because it’s so hard if you’re not on the same page) and that you’re positive about Thursday … good luck.
Just sending love to you and your family V. Its the little things like being at home together, taking long showers and sleeping in your own bed that make life special really it’s just most take these simple pleasures for granted.
Thinking of you constantly. Xxx
Thinking of you all a lot lately!! I open each Evelyn Update with great trepidation while still trying to send positive vibes your way. You have amazing strength V, and your way of putting things (and sometimes NOT putting things) makes your blog a great read even when it is about traumatic events. Here’s hoping that this whole situation will be something you can remind Evelyn of in the future as another example of the stress of being her mother!!!!
V, have just caught up here and my heart is in my mouth reading about little Evie. You must be going through the wringer right now. I hope you are managing OK and you are not physically in too much pain with all the travelling, wating around etc messing with your joints. Hang in there my friend! Also, for what it’s worth, my neice Isabelle spent a few weeks in the NICU after having seizures a s a newborn. It was awful. So awful. Now, she is an energetic five-year-old. doing well in kindy, and with absolutely no probs,other than the years she took off her parents lives with the worry…. Nobody could ever find an explanation. I hope the same for little Evie (so beyond adorable in that little swaddle! )Sending love. xx
Glad you’re home. Much love xx
My first (now 7) had seizures as a newborn also. Not nice! Just seeing the words LP on the screen make me cold and took me right back there. She was on meds for several months and then weaned off them and now perfectly a-ok no more seizures. Scary times though and more than a few sleepless nights and grey hairs thats for sure. My thoughts with you and your little E.
All the best
Shower, bed and a whole family. The simple things. Completely understand. Big hugs. xxx